I'm Aware That I'm Rare: the phaware® podcast

A new podcast series devoted to raising global pulmonary hypertension awareness with dynamic stories from PH patients, caregivers and medical professionals from around the world. New Episodes every Monday & Thursday!

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Robyn Doyle is a full-time Caregiver to her daughter
Bridget. She shares her PH story from Australia. Robyn shareswhy she’d like to be able to interact more with people who have
children with PH.

My name is Robyn Doyle and I'm from Redcliffe, which is just
north of Brisbane, Queensland, Australia.

My daughter was diagnosed at 16 with pulmonary arterial
hypertension, and they've deducted that it was caused by her
congenital heart disorder that she was born with. Sort of had a bit
of a rocky life from day one, until this present time. Had a lot of
ups and downs during that time. She has also other comorbidities as
well, she born with another genetic condition as well, so that
impacts on her pulmonary hypertension, as well. She has a rare
condition called Kartagener Syndrome and that where the cilia in
the lungs don't work properly. She gets treated the same as the
cystic fibrosis, as in the lung component but not the digestion
part. Obviously she's prone to a lot of respiratory infections, so
when she gets a respiratory infection that increases the pressures
in her lungs.

Yeah, so we've had quite a rocky life. She's always been
somebody who needed care, sort of monitored and this is the first
time I've been away for more than two nights. I've only ever had
two nights away from her in 20 years. My husband's there looking
after her, and her father, there's also her father. When she's
good, it's okay, but when she's not well - she can't bend over to
pick things up, she will need help with her showering, getting
undressed. She has a problem with vomiting, with breathlessness,
more than normal. She has a little dog because if she's unwell she
can't take it out. Hope, the dogs name's Hope. It's that type of
thing, so just with meals, helping with meals, yeah, it's a lot of
extra care. She started university but only lasted a week because
she had too many admissions in that year, so it just got too much
for her.

She has a small group of very dedicated friends, but it makes it
very hard socially for her, as well. Being socially isolated, not
being able to do what other people of her age do. I've only
recently joined Pulmonary
Hypertension Western Australia, it's about, if I want to fly
there it's about a six hour flight from Brisbane to Perth.
Something that we may go there next year to catch up with the
group, because I've a sister that lives there as well. I found that
PH Western
Australia is very professional, dynamic, inclusive, and only
been going for a short period of time. It's amazing what they've
now, with this patient directed pack, it's the first one in
Australia that's just for patients. It's got a lot of different
things that's included in the pack for patients, and for patients
to give to health care workers that don't anything about pulmonary
hypertension - like ambulance officers. When you got to a regional
hospital that doesn't know anything about PH or the drugs, so yeah
that's just amazing.

They've got a large group of different people in different areas
they're working on, so it's not just two people doing the work,
it's quite a good bunch of people. I'm very excited about hopefully
going there next year and actually meeting people face to face.

The populations 24 million in Australia, but obviously a lot
less in Western Australia and where I come from Queensland, so face
to face support groups are very hard to get going. We have a little
group at the Prince Charles hospital where my daughter goes to, but
unfortunately it's only got about 15 people, or something, with
carers that's total that come at the most on one session. A few
years ago unfortunately we lost about three people, died, and
somebody had a double lung transplant. Yeah, we don't have the
population that they do in here in America to actually get ... Its
really much better if you can actually talk to people face to face
than on Facebook.

I'd like to be able to interact more with people who have got
children, well she is an adult now, but at that same age. That's
what I find I really lack, is sort of having that. I have got a
couple of friends, but it's nice to have a group that's just for
young people, also. Even though my daughter does go to a support
group for heart teens, and young adults, but they only sort of meet
every couple of times a year. It's hard, it's hard for her as
well.

Good day, I'm Robyn Doyle and I know that my daughter is really
rare, because with pulmonary arterial hypertension, only at 20 it's
a bit of a life changing experience for her. Okay, thank you.

About the Podcast

A new podcast series devoted to raising global pulmonary hypertension awareness with dynamic stories from PH patients, caregivers and medical professionals from around the world. New Episodes every Monday & Thursday.
Through this series of impactful, insightful and, most importantly, hopeful stories from members of the global pulmonary hypertension community, we hope to further the global #phaware conversation as well as to capture, engage and enable misdiagnosed and undiagnosed PH patients because early diagnosis and treatment can mean the difference between life and death.
Topics range from the importance of early diagnosis and global PH awareness, to the impact of clinical trials to how patient support and advocacy are paramount to battling this disease.
Learn more about PH at www.phaware.global